It is his father, Kevin Farnill, who worries that Samuel is not getting the best and safest treatment and that is why they will both be attending a tribunal in London today that challenges a decision to impose value- added tax on a purer, artificial clotting agent.
Doctors agree that recombinant Factor VIII, a genetically engineered clotting agent, is purer and safer than the plasma-derived agent and preferable for treating children.
But it costs twice as much as the plasma-based treatment and a decision by Customs and Excise to impose VAT on the product this summer made it even more expensive for hospitals to use.
Dr Christopher Raper, the consultant haematologist who treats Samuel at Kingston General Hospital in Hull, Humberside, said the treatment was too expensive to use at the hospital. "It's disgusting," said Mr Farnill. "I cannot understand why they are not giving recombinant to everybody. It's the common-sense approach."
Mr Farnill and Samuel, his only son, have travelled from Hull to attend the tribunal along with other families from around Britain. They hope to see the decision to impose VAT reversed, making it cheaper and increasing their chances of getting the treatment.
Mr Farnill fears Samuel is at risk of catching diseases such as hepatitis C from the blood-based product that he receives. But his greatest worry is that the clotting agent might contain viruses yet to be identified.
Around 3,000 out of 5,000 haemophiliacs in the country have been infected with hepatitis C, and two viruses, hepatitis A and parvo-virus, are resistant to all sterilisation techniques. "I wish I could say `don't treat him'," he said. "But at the time when you take him to hospital, he is in agony, you have no choice, you just have to hope."
The Haemophilia Society says VAT is another obstacle preventing children from being treated with recombinant.
"I hope that they will take off the VAT," said a spokesman. "That will remove one barrier. It will not guarantee that it will be brought in but it will help."
Dr Raper said the artificial treatment was an advance and should be encouraged, especially among haemophiliacs who have not had treatment or are only occasionally treated, as in Samuel's case. "I look forward to the day when all haemophiliacs will be on recombinant Factor VIII," he said. "It is up to the manufacturers and the Government to bring the prices down. In three to four years, the cost will come down."
The decision in the tribunal hinges on whether recombinant Factor VIII can be classified as a blood product. Human blood, plasma-derived clotting agents, organs and milk and their products are exempt from VAT.
The human plasma-derived Factor VIII accounts for more than 90 per cent of the clotting agents used by the National Health Service. Haemophiliacs cost the NHS about pounds 40m to treat annually and some doctors say the bill would double if recombinant Factor VIII was provided for all.
More than half of the Factor VIII used in Germany is recombinant and a similar level of use is reported in France.Reuse content